I have lived with Sickle Cell all my life.
And all my life I’ve always thought that one’s ability to watch pain in many cases is a much greater strength than their ability to experience it.
I was diagnosed with Sickle Cell Anaemia 3 months after I was born.
Born in a family of four children, I am the third child diagnosed with the disease in my family. My two older sisters also have Sickle Cell. This was clear from the physical appearance of our bodies when we were growing up. Our jaundiced eyes, tiny stature and swollen abdomens showed clearly we were sick. Many thought it was malaria or malnutrition at first glance, but this wasn’t the case.
Sickle Cell Disease is a genetic disorder that deforms the normal round red blood cells into Sickled shaped red blood cells. Everything associated with blood and the red blood cells is generally affected.
Meaning, this is a multi organ disease that makes the patient highly anaemic, prone to infections and susceptible to organ failure, strokes and even death.
Even with all the Sickle Cell symptoms, pain is the main characteristic that defines Sickle Cell. This pain is known as a Sickle Cell crisis.
It manifests itself mostly in the long limbs and moves to the entire body. It’s an acute or chronic pain that varies from person to person and can only remedied by strong opioids like pethidine or morphine.
This is the kind of feeling that doesn’t go away easily. The kind that creeps up unexpectedly, takes over and handicaps your body and mind into submission.
I can vividly recall a time of excruciating pain, before my gall bladder was surgically removed. Before the prognosis of surgery was made, I endured a couple of hospital visits. I spent most of my nights beside the toilet bowl and on the floor.
This pain was like an intense hot rock in my stomach that couldn’t allow me to swallow anything without ‘returning to sender’.
That feeling could only be quantified to that of a red hot metal rod stab through the upper part of my stomach all through to my back.
The embrace of the cold floor against my tummy was what I needed to get an iota of relief. My mother knew not to touch me, she knew touch somehow exacerbated my pain. She apologized every time the cold cloth touched my feverish body.
Yet, this for me isn’t as painful as watching my sisters in pain.
Living with other two siblings diagnosed with Sickle Cell, I got a front row seat on pain. For some reason it seemed like their particular kind of pain was much worse than what I experienced. I remember a time when my older sister was in constant anguish.
All I could hear were cries from her room where she lay bedridden almost lifeless; all I could see was a bedside table decorated with prescription pills from her last hospital visit. Our house was filled with echoes and screams of discomfort and sometimes long absences to the hospital, worst thing was that nothing I said or did helped her feel better.
During these times of great pain, the space between the four walls I called home felt heavy and tense.
It was quiet and sad, I dared not mention what was on my mind.
Not long after her painful battles with Sickle Cell, my oldest sister eventually succumbed to the disease. At the age of 4, I didn’t realize what had happened. All I noticed was the silence and the empty bed.
I only fully came to understand what Sickle Cell was at the age of 14 years. It dawned on me, I was not like the others in my class. My body was much smaller, I attended class less frequently and I was treated like I was ‘special’ , special in the way a frail little hatchling is considered helpless.
Beyond the challenges at home, I noticed how the teachers in school whisper whenever I was present. “You shouldn’t be to hard on that one, they don’t live very long” one teacher murmured. At first I didn’t think the conversation was about me but soon after, most of the teachers at the school began leaving me out of class punishments and games.
The situation got worse when the students learnt I had “something”! No one knew enough about Sickle Cell, so everyone assumed the worst;
my yellow eyes and swollen abdomen (a symptom of sickle cell) emphasized the fact that I was sick.
They all thought I was contagious. Once the rumor took root, I was treated like a nonperson. No one spoke to me, sat next to me or even touched anything I owned. Walking to and from the playground was a lonely affair.
Every time I tried to approach or speak to anyone, they held their fingers up to pinch their noses and walked away. I felt dirty and ashamed but pretended to be alright. Every moment I spent in school felt like a thousand cuts. I hunched my shoulders and took lighter steps while walking, attempting to make myself smaller and invisible.
Going to school was a harrowing experience, and all I could think of was ending it all.
I couldn’t eat properly, I couldn’t speak out , I couldn’t stop crying myself to sleep. My heart was heavy and sore but I couldn’t bring myself to tell anyone.
At home, My sister and I would always cry helplessly whenever we experienced a crisis. A sickle cell crisis knew no time and space, it attacked as it willed. Radiating from source and traveling like a wave throughout the body; like the feeling of a severe toothache or a broken bone amplified a thousand fold in the entire body.
The only thing I could do in such situations was contort my body into one least painful position and lie still with fists clenched, praying for relief.
My parents would often try to manage the pain to the best of their abilities at home, nonetheless, we would always end up in the emergency room hoping and waiting for that shot of ‘release’.This was essentially the way of life I knew. The pendulum moved back and forth between my sister and I like a game of ‘catch’ except this game was played with pain. You can win, or you can let it win.
Luckily, My parents have taught me to how to win.
They are my greatest heroes.
Never in all my life on the hospital bed have I seen them tire or crack under pressure. I especially love their ability to see beyond the tears and the heartache. Raising 3 children with Sickle Cell means that they had to accept the pain that comes with it.
“These years with your children will be the shortest and hardest years of your lives”, the words from a doctor. They were told that children born with Sickle Cell couldn’t live beyond the age of 8, if they’re lucky. And these would essentially be a painful experience for everyone involved. However, this did not deter them from giving us the best life possible.
My mother told me that once she got over the denial and self blame, she was able to understand the disease and better care for us.
She treated us like people and not patients, and every pain free opportunity was spent at the beach. Accepting me for who I was helped me accept myself for who I am.
Having a great support system however is not the case for many of the Sickle Cell patients. I met Anne a Sickle Cell patient who was locked away by her mother in an isolated dark room with a mattress on the floor whenever she cried in pain.
Having no access to pain medication, the helplessness and distress sought her mother to seek such dire measures. Robert, a father who left his wife and children with Sickle Cell confessed to me, ” Why should I spend money on ‘things’ that cry all the time?! And when you take them to the hospital they don’t get well!” He feels he should focus on getting a new family and getting children who have a chance in life. Robert left his wife because he thinks she is cursed.
Sickle Cell pain and any other kind of pain has a general way of robbing you of your spirit and your will, especially if one is experiencing this for extended periods of time.
I forget how life without it feels like, forgetting the good times and withdrawing back into my bubble because ‘they’ simply cannot understand. In this bubble, colors appear less brighter and days seem much longer. And my voice is more silenced. Silenced from a world jaded from all the other pleas of the plight of humanity. There’s only so much I can do or say to make those around me understand the feeling.
Pain reduces your words to wincing and moaning. Wincing and moaning is the vocabulary of nuisance, and those who don’t understand this vocabulary don’t listen. This were the choices I had: be nuisance or remain silent. I chose silence as the better alternative.
In these moments of silence I learnt to question and sit in these questions. The biggest one being ‘Why me?’ and ‘Is this important?’
The closest I’ve came to answering the first question is accepting myself fully. And realizing that it is not just me. One is only able to do for others what they can do for themselves. Allowing myself to speak up has given me the strength to meet Sickle Cell warriors where they’re at. To share with them my experiences and create a safe space that allows them to gain their voices and speak.
Moreover, accepting myself has created space in my heart to empathize with those who few can empathize with. Being that bridge and advocate that seeks to create understanding in a world not understood by many.
Is there an importance to this pain? Yes and No.
No because with pain there are scars and trauma. Scars that linger on even after the pain is gone and trauma that serves to remind you of those moments. Moments you wish never happened and moments you dread because you know they’ll come again. It’s purpose was lost to me.
But zooming out on the life lived so far, I see now what I failed to see before. I see the many lessons that come with the discomfort; the proverbial silver lining around every cloud of pain. So yes, pain is important. It has taught me to be grateful of the good and the bad. I have learned to understand that life would only be in balance with both of them. I am learning to listen to my body so well that I can take better care of myself and others. And to sit in the pain and value those painless moments as they come and go.
All I can say is, It is so much easier to be jaded, but it’s much more worthwhile to feel.
Speak out and let us know in the discussion below. I would love to hear from you and what your insights are with regards to what I’ve shared with you. Tell us in the comment section below your experience with Sickle Cell. What is one thing that Sickle Cell has taught you? Is there any purpose to it? How might we use our experiences to speak out?
Much Love and Appreciation